My husband has just been told he is being proposed for treatment with this new wonder drug. He fits the criteria, over 65 , very low immune system, frequent infections, p17 deletion. We are excited, but apprehensive. He needs a bone marrow sample and FISH marker, c.t. Scan and then his name will be forwarded for submission. Does anybody have any experience of taking this new drug? Side effects are of particular interest. I understand it can make the patient neutrapaenic? He is already, and has numerous experiences of sepsis, what are the advantages ? Kind regards. Hw

16 Replies

Do you mean ibrutinib? If so, there are several American contributors who have had very positive experiences on here. Are you and your husband in the UK? If so, I believe that you will be amogst the first in this country to be prescribed it. I wish you every good fortune.

Hi Lartington, I have been on Ibrutinib for 3 years now., I was in the first large scale Ib/II trial group. You can go to my first blog here for a detail report of what I experienced but the short answer is that I saw major results within a month and my blood specs were essentially back to normal within a year. No side effects at all except diarrhea and that can be controlled with over the counter imodium and frequency tapers away over 3 months or so anyway. Note I was treatment naive when I started so was fairly healthy.

Good new for you is Ibrutinib is almost as effective against the del 17p subset as all other CLL types. I think the MD Anderson Cancer Center in Houston where I go now put all del-17p's on Ibrutinib as a matter of policy. From the latest papers at the AmSociety of Clinical Oncologists meeting a couple of weeks ago it appears it becomes even more effective if combined with Ofatumumab or Rituximab. If you google "Ibrutinib CLL" for the past month you'll get a large number of new papers from the meeting. I'll include a couple of recent here:

I am also on Ibrutinib, on the phase 3 RESONATE 2 study at Bournemouth hospital in the UK and have the 11q deletion. I am now in the 10th cycle as of last week and my my counts are nearly all back to normal.

At the start of the study (I was also treatment naive) my B2M was an alarming 7.9 (B2M is an important prognostic indicator, normal range 1 - 2.0) and at the last test was down to 3.3. I will again be tested on my next study day appointment with another flow cytometry and Immunoglobulins and LDH. Enlarged nodes disappeared within a few weeks, although I had a heavy tumour burden (11q- is notorious for it) in the abdomen, chest and spine which are now very much reduced.

As has been said, side effects like diarrhoea and bruising occur in the early stages but soon pass. More of a problem are the frequent CT scans and BMBs.

thankyou so much for taking the trouble to reply to my queries. He will have to go through the hoops before getting approval - but it is quite exciting. Would you say it has improved your immune system ? or are you prone to infections? cheers

2 years agoHidden

> Would you say it has improved your immune system ? or are you prone to infections?

Oh, definitely. In the 3 years I've been taking it the worst thing I've had is one brief cold.

It takes a while. When I started both by red cell counts and platelets were below normal ranges, although not extremely so. It took about 3~4 months for my RBC to get back barely in range and about a year for the platelets to. I still bruise easily (I'm 70) but otherwise seem to have a near normal disease fighting immune system.

thankyou for your comments, my husband is 74. quite fragile, having four compressed vertebrae due to prednisilone and a serious lung condition for which he had surgery a few years ago. We try to be upbeat, and look on the bright side of life. onwards and upwards and keep on smiling........

2 years agoHidden

My very best wishes to your husband and I hope he gets accepted for Ibrutinib very quickly. It and the other the other "small molecule" inhibitors coming right behind it really are total game changers in the leukemia/lymphoma battle. These are not toxins, they do not "kill" mutant cells at all, nor damage the body in the process. They merely kick them out of the cozy nests in lymph nodes and bone marrow they have found a way to hide and receive biologic signaling to stay alive forever, doing nothing useful and crowding out useful cells in the process.

CLL cells are like the 40 year old child still living with his parents and unable to hold down a steady job, and science has found a way to kick him out into the cold. Good riddance!

Wow. I love the simili. It will help when others ask me what kind of cancer I have!

2 years agoHidden

It helps to remember that a healthy white cell circulating in the blood stream normally only lives a week or so whereas malformed CLL can survive for months in marrow and lymph nodes. Once Ibrutinib kicks them out of their cozy refuges they don't survive long.

I'm beginning my second week of ibrutinib. So far my energy is back. No troublesome side effects yet not even diarrhea, but i se a daily probiotic. Perhaps that is why. Soreness in my arm where the bone marrow showed lymphoma is improved. I almost have full mobility now and no constant pain! Using my cell phone to set an alarm has helped me stick to the three capsules once a day routine. I wish you the very best and hope you will be granted approval right away.